Patient perceptions of post exertional malaise, 2018, Jason et al

Tom Kindlon · Jul 25, 2018

I was surprised that there doesn't seem to be a thread on this paper given it discusses a few times the survey that was run here.

In this case, I found it difficult to know whether to put this in the biomedical or psychosocial research section. I didn't think it was a good fit for either.

Available from: https://www.researchgate.net/publication/323916016_Patient_perceptions_of_post_exertional_malaise [accessed Jul 25 2018].

Patient perceptions of post exertional malaise

L. A. Jason, S. L. McManimen, M. Sunnquist & C. S. Holtzman

To cite this article: L. A. Jason, S. L. McManimen, M. Sunnquist & C. S. Holtzman (2018) Patient perceptions of post exertional malaise, Fatigue: Biomedicine, Health & Behavior, 6:2, 92-105,

DOI: 10.1080/21641846.2018.1453265

Published online: 21 Mar 2018.

Available from: https://www.researchgate.net/publication/323916016_Patient_perceptions_of_post_exertional_malaise [accessed Jul 25 2018].

ABSTRACT

Background:

One of the cardinal symptoms of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) is post-exertional malaise (PEM). Almost all ME and CFS case definitions mention this symptom, and there have been several efforts to measure it with self-report items. However, controversy has surrounded how patients feel about the measurement of this symptom.

Purpose:

The current study presents data on a large patient sample concerning their feelings regarding different aspects of PEM.

Results:

Findings indicated that the majority of patients did support certain wordings of both the precipitants and consequences of PEM. In addition, considerable approval was also found for a number of ways to phrase items assessing PEM. Overall, findings indicated that screening items from the DePaul Symptom Questionnaire (DSQ) were able to identify 97% of patients, which was higher than any other item. However, the PEM question that was most acceptable from patients was from Ramsay, but other highly endorsed questions were from the ME-ICC and DSQ.

Conclusions:

As there has not yet been an instrument constructed specifically to measure the complexity of this symptom, these results could be used to develop a prototype for such a questionnaire.
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Tom Kindlon · Jul 25, 2018

https://twitter.com/user/status/1022132915042443265

Tom Kindlon · Jul 25, 2018

https://twitter.com/user/status/1022136552053526528

Andy · Jul 25, 2018

Section that references our poll (reference 7), edited for readability.

The recent patient poll [7] found that only 32% of respondents felt our PEM items broadly reflected their experience of PEM. Clearly, many patients feel that other events can cause PEM (such as exposure to environmental stress or mold, and there can be many other types of PEM consequences such as sleep difficulties and severe flu-like symptoms).

However, the key issue is one of boundaries, and what constitutes PEM. For example, PEM has very specific boundaries when it is measured in the laboratory, where the challenge involves exercise or motor activity (e.g. walking or using the bike during a maximum cardiopulmonary test [41]). This test measures physical exertion, consistent with Ramsay’s original formulation of PEM, and the type of exertion described in the DSQ PEM items. While this type of cardiopulmonary exercise or activity stimulus is accepted as a way of measuring PEM in laboratories, it seems that many patients have concerns when a specific type of precipitating activity (i.e. physical exertion) is described in self-report items.

Certainly, the DSQ screen for PEM could not include all the types of stimuli or consequences listed in Tables 1–2, and of course, there are many more that could have been listed. However, there is a need to develop a more thorough self report measure of PEM, but a comprehensive PEM instrument was never the focus of the DSQ’s depiction of PEM.
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Tom Kindlon · Jul 25, 2018

https://twitter.com/user/status/1022138779807768576

Tom Kindlon · Jul 25, 2018

https://twitter.com/user/status/1022141485440008192

Esther12 · Jul 25, 2018

Have they not included the item of the CDC checklist that PACE used to assess post-exertional malaise?

"Feeling ill after exertion" (rated 'not at all present', 'present a little', 'present more often than not', 'present most of the time' or 'present all the time').

I was surprised at how some quite similar phrasing led to quite different percentages of patients voting like/dislike.

Melanie · Jul 25, 2018

Thread merged

Here are the results on the phrases portion that describes PEM posted by @Tom Kindlon via Twitter.

I think if number one said Prolonged worsening of symptoms more than 24 hours after exertion or physical activity he would have really nailed it. But who knows. Number 1 is pretty good.

If it is called Post-EXERTIONAL Malaise, then I think EXERTION should be in the description. Just my 2 cents. Maybe is should be Post-ACTIVITY Malaise or Post-ACTIVITY (Input best word here).

And 24 hours later (although it is 24-72 as I usually have the bulk of my symptoms come on 36 hours later) is helpful. When I read 24-72 hours later a few years ago, I finally understood why I could never understand what was happening to me. The truth is, I have some sort of weird energy SURGE during the first 24-36 hours. Although, that SURGE is a symptom it is also pretty immediate for me, not delayed and I never interpreted it as a symptom although the 2-day CPET test I believe is showing our biological symptoms are going wrong.

But still, excellent community input and very good results.

Melanie · Jul 25, 2018

I also think the responses by Judy Hamilton and Veronica Jones are vert good.

So, Prolonged worsening of symptoms more than 24 hours after exertion or physical, mental, stress, or social activity.

Melanie · Jul 25, 2018

Qualitative code questions:

I don't think this came out as well. I did not Crash, I got worse. And it certainly wasn't Zero Energy and I didn't Feel sick. But I think people with differing severity are involved in this.

For many years, even now, it is more Exhaustion and Symptoms Worse. I was once working, and now I am disabled and these two terms still describe me.

Dolphin · Jul 25, 2018

Although there is considerable interest in using the Patient Reported Outcomes Measurement Information System [5], their items are more closely related to the construct of fatigue (e.g. In the past 7 days, how often did you run out of energy?), as opposed to the post-exertional symptom exacerbation characterized by PEM.
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Dolphin · Jul 25, 2018

On another study:

Jason et al. [24] next engaged in a qualitative study of PEM items by analyzing a community- based sample of 32 patients who had been diagnosed with CFS based upon the results of an initial screen, followed by thorough medical and psychiatric evaluations. The authors examined eight of these patients who had not endorsed the Fukuda et al. [1] case definition item: ‘feeling worse than usual or fatigued for 24 h or more after exercise.’ This investigation found that the words ‘exercise,’ ‘normal daily activity,’ ‘physical or mental exertion,’ ‘physical activity,’ ‘minor activity,’ ‘24 h or more,’ and ‘daily life activities’ connote important differences regarding whether or not PEM symptoms were endorsed among this sample. For example, all eight indicated that they ‘experienced high levels of fatigue after normal daily activity,’ despite not endorsing the Fukuda et al. [1] description of PEM. This finding highlights the importance of including broadly-worded PEM items (i.e. items with high sensitivity) to prevent erroneous conclusions about the absence of PEM that result in missed diagnoses.
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Dolphin · Jul 25, 2018

While the prior studies focused on the discrimination of patients from healthy controls, two recent studies compared individuals with ME and CFS to those with MS. While some patients with MS endorse DSQ PEM items, their frequency and severity scores are significantly lower than the PEM scores of patients with ME and CFS [27]. Using machine learning techniques, Ohanian et al. [28] found that individuals with ME or CFS could be accurately differentiated from individuals with MS using just 5 symptoms, including one of the DSQ PEM items (‘Next-day soreness after non-strenuous activities’).
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Dolphin · Jul 25, 2018

Two recent studies have examined the PEM items included in several ME and CFS symptom questionnaires. In a study of over 700 individuals with ME and CFS, an exploratory factor analysis found that PEM items can be differentiated into two factors: a Muscle factor and a General PEM factor [30]. The Muscle factor was composed of five symptoms that referred to pain, weakness, or fatigue in muscles following exertion. The General factor was composed of 12 PEM symptoms related to a generalized feeling of physical or mental fatigue following exertion. A secondary analysis classified symptoms as ‘present’ if they were endorsed as having at least moderate severity and occurring at least half of the time. Using this frequency and severity threshold, 95%of the patients had at least one symptom in the Muscle factor and 99% of the patients have at least one symptom in the General factor. Higher factor scores were associated with worse functioning, indicative of strong criterion validity. Two DSQ PEM items loaded onto the muscle factor, and four loaded onto the General factor, suggesting that the DSQ measures both constructs of PEM. Similar results were found from Ramsay’s descriptions of PEM. In contrast, all PEM items defined by the ME-ICC criteria [31] loaded onto the General factor, signifying limited construct validity.
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Interesting to see a criticism of the international consensus criteria in the last sentence.

Dolphin · Jul 27, 2018

The screen that had been recommended by the NIH/CDC CDE PEM working group indicated that a patient would have PEM if they met criteria for any five of the DSQ PEM items, when requiring frequency and severity ratings of 2 or greater (i.e. symptoms of at least moderate severity that occur at least half the time). Among the current sample, 97% met this criterion (81.0–86.6% endorsed each individual item). This percentage was higher than any other PEM item examined in the current study. In addition, meeting this frequency and severity criteria of 2 or greater for any of the 5 ME-ICC PEM items only identified 93% of patients. Therefore, the DSQ PEM items fulfill their intended function as a screening tool.
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Dolphin · Jul 27, 2018

Discussion of the ME-ICC

Given the support for several of the ME-ICC items within Table 3, a reader might wonder why these items are not more regularly used in the assessment of PEM, and why they have not been included in the NIH/CDC CDE PEM’s recommendations. Although our group is certainly not unbiased on this issue, and none of the authors of the current study served on the CDE PEM working group, these ME-ICC items have several limitations for use in research. Just as with the general description of PEM offered by the NIH/CDC CDE, the ME-ICC PEM descriptions lack operational guidance. In the ME-ICC case definition primer [31], post-exertional malaise is referred to as post-exertional neuroimmune exhaustion (PENE), and it is characterized by (a) ‘Marked, rapid physical or cognitive fatigability in response to exertion’; (b) ‘Symptoms that worsen with exertion’; (c) ‘Post-exertional exhaustion’; (d) ‘Exhaustion is not relieved by rest’; and (e) ‘Substantial reduction in preillness activity level due to low threshold of physical and mental fatigability’ [31, p.10]. Unfortunately, it is unclear whether all five characteristics must be present for PENE to exist, or if fewer would suffice to meet criteria. Furthermore, many of these characteristics are ambiguous, as the description of the onset and duration of PENE is vague. Additionally, the ME-ICC primer [31] designated severity levels for the assessment that deviated from the original case definition [3], as the ME primer [31] implemented four severity levels of activity reduction, while only three were specified in the ME-ICC [3]. More importantly, a severity level of ‘mild’ was equated to a 50% reduction in activity levels in the original Carruthers et al. criteria [3], but a ‘moderate’ severity level equated to a 50% reduction in the ME primer [31]. There was also a lack of specific definition and assessment tools for consistently and accurately assessing substantial activity reductions and symptom severity, and without clearly defined criteria and adequate assessment tools, determining whether an individual meets these PEM can differ greatly across clinicians and researchers.
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Dolphin · Jul 27, 2018

The authors of the PEM poll [7] suggested that the DSQ PEM items could exclude cases of ME who were pacing, and thus would not endorse the DSQ PEM items. While this issue may occur, the DSQ PEM items are measured over a period of six months to capture the majority of individuals who experience PEM. While many individuals in our studies have reported pacing, most still endorse one or more of the DSQ PEM items over a sixmonth timeframe, and a previous study confirmed the six-month timeframe as an optimal duration for symptom assessment [36]. Across many studies that utilized a variety of ascertainment methods, 95–98% of our ME samples endorsed PEM, as measured by the DSQ PEM items. After this screen, we recommend having complete medical and psychiatric evaluations, and experts take all the data to classify ME. This is a two-step process, and has been endorsed by Strand et al.’s study [40] who found that the DSQ identified 60 patients and the physicians identified 56 patients as having a CCC diagnosis. While the sensitivity of DSQ was good (98%), the specificity was 38%. The DSQ appears useful for detecting and screening symptoms; however, it is important for this to be followed by subsequent medical and psychiatric examination to identify exclusionary medical and psychiatric disorders.
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adambeyoncelowe · Jul 27, 2018

Dolphin said: ↑

Discussion of the ME-ICC
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'Unfortunately, it is unclear whether all five characteristics must be present for PENE to exist, or if fewer would suffice to meet criteria,' is a problem Charles Shepherd noticed when he revised the London Criteria: http://www.meassociation.org.uk/201...-here-for-reference-purposes-15-october-2016/

Sly Saint · Sep 12, 2018

'new' article
A Brief Questionnaire to Assess Post-Exertional Malaise
Joseph Cotler, Carly Holtzman, Catherine Dudun and Leonard A. Jason *

Received: 17 August 2018 / Revised: 7 September 2018 / Accepted: 8 September 2018 / Published: 11 September 2018

Abstract
Post-exertional malaise (PEM) is a key symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Currently, five PEM-items from the DePaul Symptom Questionnaire (DSQ) were recommended as a first step in measuring this symptom for patients with ME and CFS by the National Institutes of Health/Centers for Disease Control and Prevention (NIH/CDC) Common Data Elements’ (CDE) working group.

The second step in this process, as recommended by the NIH/CDC CDE working group, involves assembling information from various sources to confirm the presence of PEM. There have not been any efforts, to date, to standardize this second-step process in the assessment of PEM.

The current study examined whether five supplementary items on the DSQ could be used to operationalize the second step of the recommendations made by the NIH/CDC CDE working group. The five supplementary DSQ PEM duration items correctly categorized patients with ME or CFS 81.7% of the time, while incorrectly categorizing multiple sclerosis (MS) and post-polio syndrome (PPS) as ME or CFS only 16.6% of the time.

The findings suggested that a PEM second-step process could be operationalized using supplementary DSQ items. View Full-Text
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http://www.mdpi.com/2075-4418/8/3/66

Sly Saint · Sep 12, 2018

The more I think about this, the more I am thinking that whatever the effects of exertion are on pwME that produce what is currently called PEM, that they are cumulative which might help explain the differences in time it takes to 'show up' (depending on the severity of the person affected).

(haven't worded that very well, but I hope it makes sense(?))

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